Below, is a story I wrote about when I first found out that I had Ushers. My story was chosen for a site for people with disabilities to read and hopefully get inspiration or help by reading. I wrote this to hopefully help others by sharing what I went through. I did win $100, because I was one of the top ten, I think if I remember correctly, to be chosen.
Losing Independence/Gaining Independence
Sitting in a dark, cold office waiting for the doctor to come in to tell me either good or bad news, I just stare at the floor waiting and waiting. The door opens and I freeze, not knowing what to think or what to say. The doctor’s words float around me as I try not to hear her. I believe her words were, “Audrey we have some bad news, you have Usher Syndrome and you are going blind. We recommend that you not drive anymore.” Not drive anymore! I couldn’t and wouldn’t believe what I just heard. Driving gave me independence and the ability to get around without relying on others. I said to myself, “What did I do for God to be mad at me?” I was born deaf, isn’t that enough? I walked around with a blank stare and sometimes broke down crying. I felt like I hit a rock wall. I couldn’t believe this was happening to me. It took me 18 years to gather strength and accept the fact that I was deaf and to stick up for myself when people made fun of me. Now, I had something else I would have to overcome and accept. This wasn’t going to be easy- anyway, that’s what I thought.
The diagnosis was made a few weeks before my graduation from high school. So much going on and I couldn’t drive anymore. To top it all off, I bought myself a car two months beforehand. What hurt the most was when my friends could drive and would stay out late, but I would have to go home early because I didn’t have a ride home. We lived 10 miles out of town and my friends never wanted to drive me home. But the time that really got me crying was when I told my mother to pick me up, and even though I had reminded her many times, she forgot to…I stood there waiting. It made me fill up with anger but it wasn’t her fault.
When my parents sold my car, I cried for hours, not because we sold the car but because of all the independence I gained and lost so quickly. I lost my ability to play softball, which was my life. I played on three teams and almost all year around. I made most of my friends through the teams I played for. I lead a talented team to the World Series twice with my pitching. I had confidence and motivation in myself when I was playing. When I had to quit playing softball, I also quit being active. I lost all my confidence. I lose the sense of what fun was, because I didn’t want to do anything anymore. I was in denial of what was happening to me.
I was frustrated and trying to come to an understanding of why this was happening. I lived in a small town and I felt that I was the only person in the world that was deaf and going blind. What more could happen I asked...? My mother wanted me to join a program called LIFTT (Learning Independence for Today and Tomorrow) at the WA State School for the Blind to learn Braille and mobility. I was numb and didn’t care; all I wanted to do was stay home. But in September 2004, I moved all my stuff to Vancouver, WA. It was my first time living away from home. Fresh out of high school and just found out I was going blind, I didn’t know if I would have the confidence and strength to do it. Days went by…and all I wanted was my old life back again and to move back home.
When I got to the program I met a young boy, Nicholas, who was in the program and now my close friend. I learned from him that God didn’t hate us; God knew that we had the strength to handle and overcome our disabilities like no one else would have. His statement about God made me think. Ever since then I realized that I could do it but not
without the help I received through the program and from the students at the blind school. I came there thinking I was the only one that was blind and deaf but quickly I found I wasn’t. Talking to the other children or learning from people what their experiences has been like and how they felt made me feel better. I started to open up again. I started gaining my confidence back. I entered a new world, a new culture in the program. The program and the people involved taught me so much. I quickly learned how to live on my own, how to get around on the buses, how to budget and manage money, how to read and type Braille and how to use a cane.
Four months into the program I was ready for a new challenge and experience: living on my own. This was a big step for me and before I came to the program I couldn’t see myself living away from my parents and actually surviving. I didn’t have the confidence before like I did now. Now I was ready. In February, I found a place to live in that wasn’t far from the blind school so I could walk and go to my Braille class. At first it was hard, because I had a lot of responsibilities like bills and how to pay them. What I do know is that I wouldn’t have been able to do it without support from my family and people that I’d met at the blind school- such as the supervisor of the LIFTT program, my Braille teacher, Nicholas, students at the school, and some staff at the school. Just knowing that I wasn’t the only one out there and knowing that blind people can do whatever they want as long as they put their mind and heart to it, I discovered that I can be a successful blind-deaf women. I also learned that you shouldn’t take everything for granted. Just because you can’t drive doesn’t mean you don’t have independence. Yeah, it was nice, but it was a different kind of freedom. Now I have a new life that I’m starting to get the hang of and enjoy. Everyday I sit down and smile to myself and say, “Wow, I’m doing it and I am not afraid to try at anything.”